I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
When I met my husband Kyle in high school at the age of 16, everything was perfect. We were perfect. We were madly in love with limitless possibilities ahead of us. The world was our oyster and we couldn’t wait to “grow up” and start living.
We got engaged in college and married shortly after graduating. A few years into our marriage, we began to notice that my balance and coordination was deteriorating. After many, many doctor’s visits and tests, I was diagnosed with Friedreich’s ataxia (FA).
Talk about a gut punch. I will lose the ability to walk? What? That wasn’t the plan. That wasn’t what I pictured for my marriage. I was so scared that this disease would turn my husband into my caretaker.
I didn’t want FA to define our marriage, so we try to go about our lives and normally as possible. We don’t let FA dictate our course. However, it is always a factor. FA is like the awkward, unwelcome third wheel in our relationship. And as much as we try not to give FA power, it influences a lot.
We had to buy a one-story house because I can’t do stairs. A lot of the traveling we had in mind would be extremely difficult, therefore it is no longer appealing. Adventure trips like skiing and hiking are way less enticing. FA just makes everything so complicated. Not impossible, just complicated.
Even small things like deciding what restaurant to go to (how much walking is involved?), which seat to reserve for shows and movies (what is the stair situation?), or what to do in the evenings (how much walking have I done today; what do I feel up to?) are affected.
My mind revolves around FA. It has crept its way into every aspect of my life. It is so easy to let it consume my everything, to be my sole focus. But that is neither healthy nor productive. I had a life before FA. I need to keep striving for that life, even with FA.
There are two people in my marriage — it isn’t just about FA and me. So, I make a conscious effort to not make it my daily focus. Our relationship is my focus. FA is just added to the list of things that affect and influence our marriage, just like our children, work, friends, church, hobbies, in-laws, etc. We are not defined by FA.
Getting diagnosed with FA rocked our world. We are still adapting and adjusting. And we will continue to do so as my disease progresses. I am just eternally grateful to have such a fantastic partner to navigate this most unexpected obstacle with.